community download

Positive Collaboration - Alström Syndrome UK

information we require

please check before submitting



Unfortunately the document is not available at this current time, however if you leave your details we'll get it to you as soon as we can.

Please fill in all the information requested. It is very important you enter this information correctly so we can contact you with the document.

Privacy statement »

Manage your email preferences »

Remember my details Information

Information
Remember my details
We place a 'cookie' on your computer so next time you visit us you don't need to fill in all these details

Kerry Leeson-Beevers, National Development Manager at Alström Syndrome UK joined us at World Orphan Drug Congress Europe 2015 to provide insight into the role how positive collaboration has boosted their work. 
 

Alström Syndrome UK was established in 1998 by 2 parents in Devon. Collaboration from specialists from Torbay Hospital helped to raise awareness as the group began to see more patients from elsewhere in the UK (voluntarily). Birmingham Children’s Hospital and Applied to the National Specialised Commissioning Group for specialised multi-disciplinary clinics soon became involved. ASUK are now equal partners in the delivery of the highly specialised service to patients with Alström Syndrome, funded by NHS England.
 

Download this presentation to find about more about Alström Syndrome UK and how positive collaboration has enabled them to achieve:

  • Rare Disease Centres at BCH & QEH
  • Research Projects into Cardiac Investigations, Lifestyle Study and Potential Phase 2, Single-arm, Open Label Safety and Tolerability Study
  • New ASUK Projects including a Transition Project with £69,570 in funding received from BBC Children in Need
  • Opportunity to expand our Asian Mentoring Scheme 
  • Patient Organisations - £150,000 secured funding 

Get you copy of this presentation here >